Pinktober

Stretching my legs between flights to Philly this week, I enjoyed the chaos of Chicago’s O’Hare airport. I might have endured more than enjoyed but as a colleague taught me years ago, why not pretend it’s all fun, and so I imagine these treks as the start of vacations, including the airport chaos. I walked past a series of five-foot by three-foot posters. There is little blank wall or quiet space so why it is I stopped at this one spot, I don’t know. But I stopped. And stared.

In front of me was a more than life-sized photo of the playwright and comedian Jenny Allen encouraging us to “Be Brave. Ask questions.” The public service announcement goes on to explain “I had abdominal pain and periods that weren’t normal for me. Menopause, I thought. But no, I had uterine and ovarian cancers. If you have symptoms lasting two weeks or longer, be brave. Go to the doctor. Ask questions.” The poster then promotes Inside Knowledge a link that apparently gets to the trickier details of identifying gynecological cancers.

There I was, full sized plus, promoting understanding. It even looked like Jenny and I might share the same hair stylist. An outtake of her one woman show “I Got Sick Then I Got Better” http://www.youtube.com/watch?v=TaEPW9Mo7Vc resonates many times over – especially the default way people need to emphasize how good you look as if to prove they don’t need to navigate the trickier terrain of finding out how you are coping with your cancer diagnosis.

This poster is great. It stopped me and I hope it stops many others who might be trying to understand their bodies in the face of menopause and other vagaries. But nonetheless, I was discomforted by the word brave. Would bravery have helped? I don’t think so.

Maybe, maybe if I had had any accurate information on ovarian cancer symptoms, I might have gotten into the doctor earlier. Such information could have allowed me a diagnosis of stage 3 versus stage 4 (the worst). And maybe, maybe being reminded to be persistent and pushy (two adjectives often ascribed to me, as is the word brave) could have also allowed a stage 3 diagnosis. But stage 3 in ovarian cancer is mighty terminal, just like stage 4.

The premise of early detection annoys me. Your internal organs are just that – internal. Until our science and medicine evolves, it is tricky to detect early the usually asymptomatic start of cancer. Early detection of these cancers almost always involves luck. (Remember, breasts jut out allowing exploration.)

I admire Jenny Allen, I appreciate this poster and even the silly full-page advertisement I found in a People Magazine earlier this year of two beautiful women putting on disguises to show just how tricky ovarian cancer is to identify. Bravo. Getting information out is always a valuable step. To me the best information to share is that ANY symptom that a person has for more than two weeks in a calendar month needs to get explained because that could most logically be a symptom of cancer on the move.

I flew out of O’Hare and into Philadelphia in the early hours of a new day. It was a beautiful night for my walk from the train station to my guest condo. The downtown skyline to my left was even more gorgeous than usual and it took me a few blocks to connect that the pink tube lighting of skyscraper rooftops was a nod to Pinktober – the month for breast cancer awareness. I did not remember to feel my breasts for possible lumps but it was a lovely sight.

Advertisement

September Hosts Ovarian Cancer Awareness & International Talk Like A Pirate Day

There is a month, a walk, a ribbon and more to mark many an occasion. I find it a bit much. It brings out my uncommon cynicism as does all the adoration we shower on “children” to make sure every one is born while we live in communities with ever growing poverty rates for these same creatures who we increasingly refuse even to educate.  Just how much do we love them? I prefer action to words and symbols.

But symbols do matter and they can be a powerful call to action – we only need to think of pink ribbons to see a symbol lead to unending zeal. (And still women die of breast cancer at staggering rates that some argue are minimally changed since the pink ribbon campaigns started.)

September is the month of teal ribbons for ovarian cancer. Last Friday was wear teal day. I didn’t, it’s not my thing but I applaud the many who do and use the color, day and month as effective openers to educational conversations. For example, spreading the word to “B-E-A-T” ovarian cancer by sharing the early warning signs of the disease.

B = bloating that is persistent and does not come and go

E = eating less and feeling fuller

A = abdominal or pelvic pain

T = trouble with urination (urgency or frequency)

Women who have these symptoms 12 days in a calendar month should see their doctor. And when they see their doctor they should be prepared to push for adequate testing because such symptoms can be hard to work with. Or, like me, you might have none of them and the cancer has already metastasized to the lungs. Early detection is hard. Prevention is hard. We just don’t have enough tools yet. The funding that might advance cancer knowledge is being cut by our government of and by the 1%.

U.S. President Barack Obama designated September 2013 as National Ovarian Cancer Awareness Month. President Obama lost both his mother and grandmother to this disease and has two young daughters; prevention and early detection should be very much on his mind. Libby’s Hope, an excellent ovarian cancer awareness and survival organization, offers a website full of early detections tips and motivations. Get aware then share. And ask our congress people to stop the Sequester that is slowing down the very cancer research that might unlock more critical mysteries of cancer allowing early detection to be the norm vs the exception.

In the meantime, I read with deep contentment the skillful column by Susan Gubar, shared below, who quarantined her cynicism and unleashed her congratulatory nature as she approached dealing with September as Ovarian Cancer Awareness Month with way more elegance than I. Enjoy….

http://well.blogs.nytimes.com/2013/09/12/living-with-cancer-a-rainbow-coalition/?_r=0

SEPTEMBER 12, 2013, 1:35 PM

Living With Cancer: A Rainbow Coalition

By SUSAN GUBAR

Everyone recognizes the pink ribbon of breast cancer, but fewer know the color of testicular (orchid), uterine (peach), lung (white), pancreatic (purple), or head and neck (burgundy/ivory) cancers. Given current research and treatment, as well as a commitment to equity, is it time to imagine a rainbow coalition?

Breast cancer activists have brilliantly organized to heighten public awareness of a disease that threatens too many women. Support groups, regional conferences, runs, T-shirts, memoirs and photographs raise money for research and help individual women confront a dire diagnosis.

In a post on the Foundation for Women’s Cancer Web site, writer Tranette Ledford worries that she has “the wrong color of cancer.” More than 90,000 American women are diagnosed annually with “below the belt” cancers, but they do not get the attention, information and care they need.

“When we look at cancer through rose colored glasses, we save thousands of lives,” Ms. Ledford wrote. “We might save thousands more if we look through a stained glass window swirling with all the colors representing women’s cancer.”

Even though TV ads tell us about erectile dysfunction and prostate cancer (light blue), are we leery of publicly discussing “lady parts”? I take this to be a serious question about the debilitating silence surrounding gynecological cancers.

I wonder as well about colorectal cancers (dark blue) that afflict men as well as women. Any disease involving excremental matters seems to remain unspeakable for the most part. It is difficult to ascertain the color of anal cancer, but I believe it is purple/green. Also marginalized in representation and debate are men and women dealing with cancers that afflict smaller populations — like multiple myeloma (burgundy), carcinoid cancer (zebra) or thyroid cancer (teal/pink/blue).

American history has taught us that separate is not equal.

In the midst of these competing claims for attention and support, cancer research is undergoing a paradigm shift. We are informed that there are several quite distinct types of, say, breast cancer that must be treated differently. Just as important, a single genetic mutation can cause cancers originating in different body parts.

Today a number of drugs work on multiple cancers. Gleevec has been used on leukemia (orange), but also on gastrointestinal stromal tumors (periwinkle). Avastin is effective for certain colorectal, nonsmall cell lung, brain (gray), ovarian (teal) and kidney cancers (also orange—there are only so many colors to go round). Doctors can now prolong lives by prescribing Abraxane for breast, lung and pancreatic malignancies.

Perhaps the organ of origin is less important than other factors. In this context, the balkanization of cancer identity politics seems absurd. Why should people with melanoma (black) contend against people with liver cancer (emerald green) over limited resources? Instead of haggling over a meager slice of the pie, the breast surgeon and author Dr. Susan Love has argued, we should demand a bigger pie.

Wouldn’t we have more clout banding together not only to support research into prevention, detection and cure but also to counter the exorbitant expense of treatment? The price of some of the newer drugs is sky high. Gleevec can cost $100,000 a year, Avastin $100,000 a year, Abraxane $96,000 a year.

The issue of the colors of cancer was raised by Ms. Ledford to broadcast the fact that September is National Gynecological Cancer Awareness Month (which is sometimes called National Ovarian Cancer Awareness Month). There is cause for celebration among this constituency because a new study in the journal Cancer suggests that the biomarker CA125, when used over time to monitor change, may finally provide a much needed detection tool for ovarian cancer. Currently 75 percent of those with diagnoses deal with late-stage disease and miserable mortality statistics, as I do.

On the first day of National Gynecological Cancer Awareness Month I discovered that the experimental drug extending my life has been so successful that it will be moved from a Phase 1 to a Phase 3 clinical trial. Unlike the Phase 1 trial, which studied the drug in various cancers, the Phase 3 trial will be open only to breast cancer patients. I very much hope it will help the women enlisted, but what about those excluded?

Maybe cancer research and fundraising can’t function without organ-related identifications. Pharmaceutical companies are drawn to large markets. Money is often donated by people honoring a beloved friend or relative felled by a particular form of cancer.

Important as the ribbons are, however, can their use inadvertently set advocates against one another? Without relinquishing the colors, what would it mean to support people dealing with every type of cancer? In the 21st century, children and adults with cancer are unfortunately legion.

We may have something to gain from dreaming a dream that really can come true of banding together under a symbol adopted by a number of social justice movements: the spectrum of a rainbow coalition. I would like to wear that sort of bracelet, though I have never seen one in the hospital gift shop.

This idea comes to me during National Gynecological or Ovarian Cancer Awareness Month. The ovaries are where we all come from.

Early Detection – Delaying Mortality

In the world of cancer, a land 1 in 3 people will visit in their life time, the stage at detection determines whether it is a minor nuisance or the close of life. There are only four stages.  I was diagnosed at the fourth stage otherwise known as metastasized, advanced, systemic or end stage cancer.  None of the stage IV descriptors are meant to sound good.  But early detection, now that is good.

February apparently is early detection month – this is my contribution to that effort.  (It is also black history month – African-Americans are disproportionately impacted by cancer in this country mainly due to less access to medical care.)

Ovarian cancer is known as ‘the silent killer’ but most cancer functions silently.  Abnormal cells start growing, are not evicted, create a mass, travel around and at some point they get big enough to create a secondary problem.  Big enough is often too big.  There are over 2000 forms of cancer and trying to be on top of all of them is hard for the best of the oncologists. So how to detect early with out moving towards hypochondria?

While my expertise is limited to my form of cancer, I have found tremendous commonalities exist.  Unless you have a huge tumor grow fast and protrude from your body, usually the easy ones to treat, you are looking for subtle symptoms.  Now let me describe subtle – it is not the discomfort in your big toe or a passing stomachache – subtle here is about persistence.  For ovarian cancer if you have any issue in your abdominal area that you note for 11 days out of a calendar month, well, it’s time to make an appointment.  Those 11 days do not need to be in a row.

Now odds are your doctor will pooh-pooh you especially if you are younger.   I was allowed to leave my first appointment with a lung approaching collapse that was dismissed as bronchitis despite the fact that I felt fine, I just couldn’t breathe.  The aide who checked me out tried to console my wasted visit with a “better safe than sorry” mantra.  The next week I was in the emergency room, barely able to walk, talk let alone breathe leading to an emergency tapping of my chest cavity that removed liters of cancerous fluids.  No, don’t expect your doctor to decide you have an issue.

If you want early detection you are going to have to work for it.  Calendar what you feel, know your family history, push the medical community.  And if it ends up being nothing leave with joy in your heart.  Your job is to check fiercely and then let go.  I had my symptoms for at least six months prior to emergency diagnosis. It is hard to find a photo from that time where I am not holding my stomach.  The discomfort was modest but persistant. Every woman lives with occasional symptoms that make up a gynecological cancer – so the trick is duration not severity.  It is hard knowing that you could have been caught at an earlier, survivable stage.

Testing for cancer is not easy with so many different cancers to be found and defenitive diagnosis requiring surgical probes.  There are simple blood tests but they need to be matched to the cancer being pursued.  And a positive blood test sets off much more intrusive testing.  Doctors have good reason not to seek out cancer casually.  Breast exams are an example of progress but they yield a high percentage of false positives leading to stressful, invasive follow ups.

So then again, you just might want to hope for the best and instead apply early detection to fiscal matters.

I am not known for careful administrative control of my life.  The first time I filed taxes I sent them to the wrong state.  That state was grateful and insisted on keeping them despite the fact that I really owed the amount elsewhere.  This experience may or may not have influenced my conclusion that the less I attended to financial matters the better.  I coped by trying to minimize my exposure – I spent very little.  It served me well in management because I avoided expenses and made checks and balances very, very simple.  I ran organizations from age 23 on and was known for this effective but odd style. This month I got my comeuppance.

When diagnosed, I relocated for easier access to services that can be found in a city in the hopes of prolonging my life.  My small town credit union account became my savings and I opened a new credit union account near to my new home.  My new account handles my bills.  I peer in monthly to conduct business.

Every time I tried to peer in to my old account, though, my password wasn’t accepted or the test questions were too obtuse for me.  What was the name of my last dog?  My dog just died after 16 years – which last dog?  And was it all lower case?  By then I had tried too many times and was locked out.  I could never get in.  Finally I vowed to make it happen, hung on the phone for personal guidance, got into my account and thought ‘holy shit!’  I fast dialed the teller back and said something is very wrong.  In fact, in the last month my account had been blatently hacked – check after check was signed by this dude, Brandon DeWeiss, from his checkbook, with his address in Gresham and his signature. And yet my account was paying for it.  To the tune of thousands of dollars.  The fraud teller assigned me, while very nice, had a changing story of what I was liable for. First it was anything beyond the last 30 days, then it was the far more dire liability for any fraudulent check not caught in the last 24 hours.  So, am I supposed to check my account daily? And when did banks start cashing checks with out looking for any sign of relevancy?  And when did that lax attitude become my problem?  My account is now full restored after a few days of deep stress.

So I guess early detection is a good rule for life. I am not sure that I am the best to guide anyone further along that path, though.

The photo shared here just won an award.  It reminds us that beauty lies everywhere.  In this photo you see ovarian cancer.